10 Tips on Living with Chronic Illness

As I write this piece I am sitting in a health clinic that my daughter and I attend. When we were here yesterday, a woman who suffers from the same condition remarked how badly her mother felt at having passed it on to her (our condition is genetic). Before I had a moment to think, I blurted out that I didn’t feel badly. Don’t get me wrong–I hate seeing my daughter in pain and like any mother I would love to remove the word “suffering” from my child’s life. However, it’s just not realistic.

I remember being pregnant and hearing the refrain, “I don’t care what gender my child is as long as s/he is healthy.” I did not join in. There was every chance that my child would suffer the same chronic illness that I do, so we make the best of what life gave us, whatever the challenges. Some of those challenges are day-to-day–my four-and-a-half year daughter still doesn’t sleep through the night–and others are major, like when she was nearly two and we both needed to be hospitalized at the same time. I put my hospitalization off for a week so I could stay with her at the children’s hospital, which made me a lot more unwell.

Mainly, though, we carry on our lives much like any other family—having incorporated all the adjustments we need to make into our daily lives. Here are our top ten tips for living with chronic illness:

1. It’s OK to be grumpy
We usually try to be brave and just get on with it, but some days it is just frustrating and annoying and it helps to say so.

2. Imagine being well
The power of visualization is phenomenal. (We have managed to avoid hospitalization for the last two years with this as one of our tools). It is best carried out between 4 to 6 a.m. but useful anytime. If you can imagine feeling well, you can be well.

4. Treats help
A sweetie, staying up a little later than usual one night, a new book. If you have just gotten through a particularly tough time, reward yourself for seeing it through.

5. Maintain balance
On the one hand, do absolutely everything you possibly can to find out about the latest research on treatments, things you can do to manage your condition better and so on. On the other, do not spend your whole life chasing “cures”—learn to accept your condition and live!

6. Ask for help
You don’t have to manage it all on your own. Just like helping others makes you feel good, give others the gift of allowing them to help you.

7. Cry
It is a great release to let the feelings flow.

8. Smile
Especially when you do not feel like it. It confuses your brain into actually making you feel better.

9. Rest
When you feel well, it’s tempting to rush to get everything done that you put off when you were ill. If you can rest, then you actually have a better chance of maintaining your wellness.

10. Miracles can and do happen
There are many stories of amazing turnarounds and things happening that science cannot explain. The fact that I have a daughter is one of them. Your story could be such a miracle too!

ABOUT THE AUTHOR

JC Niala is a mother, writer and creative who enjoys exploring the differences that thankfully still exist between various cultures around the world. She was born in Kenya and grew up in Kenya, Cote d'Ivoire and the UK. She has worked and lived on three continents and has visited at least one new country every year since she was 12 years old. Her favorite travel companions are her mother and daughter whose stories and interest in others bring her to engage with the world in ways she would have never imagined. She is the author of Beyond Motherhood: A guide to being a great working mother while living your dream.

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